ulcerative proctitis

This is my first chat and hope I'm doing it correctly.  I am 56 years old and was diagnosed w/ ulcerative proctitis when I was 31.  Have been on asacol, cortenemas, rowasa, mesalamine, prednisone...  Usually the prednisone would stop the flare up.  Unfortunately, I have been in a bout for 5 1/2 months (started after a 3 day flu) and nothing has helped.  Am in the bathroom anywhere from 3-17 times a day(have to wear a diaper in the morning).  I am finally starting on 6MP today and am nervous but excited and hopeful. Any thoughts, suggestions...  I can't take this and the quality of my life has really been affected.

The only thing that aids my proctitis issues is cortifoam (steroid based enema), the sooner you start it the quicker it will clear it up (for me at least).

:)

       I'm in the same boat...ulcerative proctitis.  It's located at the very tip and very stubborn, just won't GO AWAY!!!  I'm on 35 mgm of prednisone (weekly taper), 100 mgm of 6MP (been on 6MP for six years, but at a lower dose), Colazal (nine pills a day), Cort enemas nightly and Canasa in the am.  Is it any wonder I am a walking zombie?

     No, but I heard a lot about the SCD Breaking the Vicious Cycle by Elaine Gottshall.  I recently purchased the book but haven't started the diet yet.  Guess I like to eat too much.  I do restrict my diet.....no greasy, no fried, no spicey foods.  I eat a LOT of fish, especially salmon, yogurt, soft vegetables NO SALAD.  For breakfast I like rice krispies with Silk, half a banana with 1T of Red Mill Ground flaxseed MEAL on top.  Stay away from caffeine.

Will look at the book. Surprised you eat yogurt. Dairy products rip me up. I too am a foodie and love to cook and bake.

maazee11 said...
 

My question is does anyone else suffer from extreme fatigue after a flare-up?  I am exhausted.  I can barely make it through the work day and just lay on the couch when I get home.  Also, I noticed that I had a lot of back pain and other symptoms of inflammation in my body after this flare-up.  Anyone else notice this type of thing?  I am going to my doc tonight to enquire about this.

Thanks all.

Yep...fatigue is my worst symptom..its so bad some days and I get really shaky, headachey and lightheaded; and like you cannot make it through the day, and even if I do I'm whacked out for the evening.

And yep I also am very achey - especially in my back, however I'm not sure whether this is from my meds or from the disease, or maybe a mixture of both.

I don't get achey but I have attributed the fatigue to the loss of so much fluids, nutrients and blood. Also, the havoc the body goes through.

maazee11 said...
Thanks for your response Qwerty...are you still fatigued after a flare-up? I am just getting over a flare-up and that is when the aching and fatigue started. I can't remember having it this bad with my other flare-ups. It's nice to hear that some people understand...my husband is clueless and thinks I am trying to get out of cooking dinner at night!

Well I haven't ever properly been out of a flare to be honest, I have been having symptoms for over 2 years now, diagnosed 18months ago. They just haven't got me sorted on the right medication etc yet! But I've been having feelings of fatigue for the entire time, however its got considerably worse as the actual disease has got worse, and as I've been put on stronger meds.

Like I said in my previous post it is my worst symptom and the one that gets me down and interrupts much of my life. I can't handle working full time at the min, and don't do anything much other than go to work. Some things I have found helpful though are...

- Planning out my days/week - ie don't plan too much in one day but spread it out. And if you do have a particularly busy day (even if its doing something you enjoy) make sure you leave adequate time to 'recover' and rest.

- Make sure your days off are in fact days off' and not spent doing too much.

- Take vitamins and make sure you eat the right foods - fruits and veg etc.

- Drink plenty of water

- Sounds obvious but get as much sleep as you can.

- Not sure what your job is but if possible try and split your breaks up - ie I work in retail so am on my feet much of the day...I tend to try and have a short break every 2 hours.

Hope thats some help! :)

     I am very fatigued but credit that to all the meds.  While on prednisone I have to carefully monitor my blood pressure as it shot up to 210/110 last year while I was flaring and I had to be hospitalized for ten days.  So far, so good on that part though.  I take Benicar and Toprol xl for the BP and it has been 110/66....yippeeee...something is working.  I should try taking a multivitamin which contains iron.  Maybe that will help.  Right now I am taking one which doesn't.

     I have to get into my profile to change the med info...can someone tell me how to do that?  I forgot...senior moments.

Try going to "great taste no pain" web-site. It has help me get back to solid stools & get off prilosec. have had colitis,proctitis, since '84. Good Luck

Hi Jonesie,

I found this quick blurb on the meds you are asking about  and it seems that poisoning only occurs after prolonged use (more than 4 years): http://www.crohns.org.uk/Docs/2/Acetarsol.html.  It also says that is should be used as a last resort if steroids haven't worked.  Did you try the steroids on their own?  The steroids did nothing for me...the mesalazine worked best, but you can't take it.  Try the steroids alone first and then see if you have to go to the Acetarsol.  I am sure your doc knows best.  Have you tried to change your diet?  That may help too. I eliminated yeast from my diet and feel much better.  about your boss...I would get documentation from the doc (a medical note stating you have an ongoing medical condition) and back it up with research on the Internet about the hardship UP or UC causes (if you aren't too shy to do so...some people would find it hard to talk about their bottom malfunctions) and try to get him/her to understand.  I think in most countries if you have medical documentation and you are let go, you have a case for wrongful dismissal.  Let's hope it doesn't get to that.  I think the frustrating part of this disease is that you can look so normal, but be suffering so much, so people don't get it.  Good luck!

Hi again,

I totally don't believe that stress and diet aren't a factor. I sometimes think the medical professon forget about the simple solutions because they are brainwashed by the pharmaceutical companies. We are all in the same boat on this page to varying degrees, so at least you know we understand. When I have a flare-up I avoid dairy, but continue to eat yogurt that has the live bacteria so that my gut can stay well balanced (if it is possible). I also stay away from high fibre things when I am having symptoms because they seem to aggravate matters. I tend to stick to things like chicken soup with noodles and root veggies, white rice, bananas, chicken...you know, the easy stuff. Then when I feel better I start to reintroduce more high fibre options. The gluten free way may be a solution...so many people are really sensitive to gluten. I don't seem to be, but I know a lot of people who suffer horrible GI issues when they eat glutenous foods. It is a hard transition, but once you i.d. products you like, it gets easier. I am a big cake and cookie person, so that is where my weakness got the better of me. But I do have to say that I have cut my gluten intake to about 10%. I'm not sure if it is helping or not, but what do I have to lose...other than weight. I have actually lost weight from reducing the gluten-type foods out of my diet. That's a plus!

Other than diet I have found that reducing stress is huge. I know it is impossible to eliminate it completly, but since I have been saying no to demands and yes to myself in terms of relaxation, I have felt much better. My doc suggested this mindfulness meditation. I live in Toronto, Canada and a lot of our hospitals run programs on how to do this as it is becoming a tool in doc's kits to help people with all sorts of problems including UP/UC, but I am on a waiting list, so I got a book on it at the library that is really great. I don't have the title right now (something about Catastrophe Living and Mindfulness), but it really has helped me reduce stress when I start to feel it and keep me level headed.

If I think of any other tips, I'll let you know. Again, good luck. And whenever you are feeling upset/stressed, come on here. I'm always around to help out.

Hi All & Maazee11 in particular,  This is the first time that I've looked at the forum for a while as things have not been good for me.  I seemed to go down hill fast - two very embarassing accidents, one at work and one in a supermarket when I had to clean myself up and buy new clothes. I think that morning will stick in my mind as one of the low spots in my life. More time off work but I'm past caring now. A high temerature, abdo pain and being sick on my Dr got me my first ever stay in hospital. After hydracortesone IV, I'm now convalescing at home. I've been on increasing Azathioprine until I'm now on my ongoing dose of 100mg, with steroids reducing from 40 mg now at 25mg. I had been really worried about going on the Aza. I've had some strange side effects but my blood tests are fine, and for the first time in a year I actually feel as if I have a life and can plan to leave the house without worrying. It's all very well being told to de-stress and  relax but that has been difficult for me whilst working hard to hold down a job and cope with the symptoms. Its only now I feel 'normal' that I can think straight. I'm keeping my fingers crossed that the Aza will do the job for me, but I've been told that its only a 3/4 year fix so I could be looking at going downhill again in the future. That really concentrates the mind! We are finally talking about holidays and even just going for a day out seems wonderful. Life has been hard for my husband too and its easy to forget the worry that our loved ones go through. My husband has been made redundant so changing my job at the moment isnt an option, but I know that I must take the advice and rest more - somehow! Thanks for listening. This past year has been so hard.

Does anyone else has any experience of Azathioprine? Were you also told that its only for a few years?